Tuesday, August 28, 2012

Busy but exciting week so far!!

I received chemo at just 60% dosage since my white cells are having a hard time climbing. I had them checked last week at RMH and they were 1.8.  Monday at Crossroads, they were 2.0. Still pretty close to being dangerously low. So...I had to go back Tuesday for a shot to rebuild my white cells quicker and hopefully be able to get chemo in two weeks. I was suppose to UP the dosage 10% each week until I was at 100%. I started at 60% and have not moved up any in my dose that Dr. Javle ordered. My blood just doesn't like it! Could likely be a side effect of the radiation. I just pray I  don't struggle with it every week from here to years to come. I asked my dr in Effingham if this meant the first signs of my cancer going south and he stated "absolutely not". This dr just lays it out there like he sees it....he is as honest as they come. Neulasta is the shot I received today and the main side effect is bone pain (IF I get the bone pain, I will start getting it in about two days but controlled with Motrin, etc. I have chemotherapy induced neutropenia (which is a white blood cell deficiency). This drug should help get my count up within 7-10 days. My platelets are at like....86,000 so they are going up nicely although they also need to CLIMB alot.

As alot of you know, I was on MD Anderson's Cancerwise website as a featured liver patient. I explained in detail my experience of when I found out about my cancer to finding a place that offered me my first sign of hope. If you haven't read my story, please google MD Anderson Cancerwise blog( or look at the previous post and it will take you straight to it) and you should be able to find it. They even have my picture so it is hard to miss me!! I was honored they asked me to blog for them and I just felt a step closer to the MD Anderson family.

I worked most of the day besides a quick trip to get the shot but I had a weatherization appointment and the lady brought two little boys....one with an awful green snotty nose. I had some McDonald trucks so I gave each kid one and said you stay away from me and my desk.....Thank goodness for Germ-X!  Just hope it didn't go air born as he coughed at me. Argh.....sick, coughing, snotty nose kids have a place....AT HOME!

My niece is getting married this weekend. Rachel Ruesch to Courtney Yockey. I have a cousin and his wife from New York in town all weekend for the festivities, PLUS an added bonus of my nephew and his wife from Alabama. Oh...I can't forget my Aunt Belinda (my dad's baby sister) and Uncle Don from Kansas City. I am not letting a little shot or chemo this week stop me from atleast most of the events that might get planned.

I ask for special prayers this week for a third maybe fourth cousin of mine in Olney who is getting a needle biopsy on one of her breast. I ask for prayers for the Chris Kirkwood family. That God give Chris's daughter extra strength and guidance at this time. I pray for so many things at night especially. And then another 5 minutes thanking God for things that have happened on a good note for people that I sometimes hardly know. It doesn't matter though, we are ALL God's children.

Past my bedtime but just wanted to update after my chemo on Monday.


In Faith,

Have you heard?

I am ALMOST famous for a person with a sickness I don't even feel like I have. This surely means stability. I pray every morning and thank God for every day, every minute of each day for my pain-free life. God is good to me even with this monster inside me. I have FAITH I will continue to hear good words from Dr. Javle's mouth. Please look at the Cancerwise website or the link below to read "MY STORY"

Hope Restored for Rare Liver Cancer Patient

Wednesday, August 22, 2012

A small bump in the road.......

I went for lab work on Monday to check my white count and platelets. I thought my white count would be low as I had four cold sore on my top lip and a sore throat from sinus drainage. It was 2.4. It should be atleast in the 4's to the 10's to be within normal limits. My platelets were 89,000. They should be between 130,000 to 400,000. They are low but I will probably still get chemo. Then I get a call that Dr. Dy wants some additional blood tests ran so I go back to RMH lab to get stuck again. NOW (the next morning) my white count is 1.8 and platelets are at 81,000. Anytime the white counts drops into the 1's...the lab has to automatically call the dr asap to alert them. I never received a call from the dr so ......hmmmm. They will probably just give me a shot when I go for chemo to make my body make the white count jump up faster.
I just wish things were calm and my blood was not so finicky with the chemo/cancer running through it.

I am still exercising probably 4 days a week. Pat and I walked a little over 2 miles this am. It feels so good to get out and walk briskly in this crisp weather. When I walk so brisk, sweat so much from walking, I ask myself...."are you sure you're sick...."  As I walked out to get in my car this morning, the air was so fresh....I stopped and thanked God for letting me have the opportunity to be stable enough to go to work and to also take in that fresh, crisp air.

I have been painting alot recently....maybe I will take pics and put a few on here soon. When I say I am painting...I am watercoloring. I like watercolor because you have wiggle room and they do not have to be perfect. I find peace just sitting at the dining room table, looking out the patio doors and sometimes I spend hours painting ONE picture.

The chemo drug I am on - Irinotican (Jourdan Kuykendall Laughlin says in pharmacy school they talked about that drug and she remembered it by saying "I run to the can"...too funny). Another small but not at all concerning side effect to me is I have thinning of my hair and boy is it ever thinning. When I did the radiation, afterwards my hair was growing at an alarming rate and it was all curly when wet. I had new hair coming in all over my head.....now...it is all leaving. I wear it very well all over my clothes. Who really cares....I don't. I won't go bald...just thinning.

I see my cardiologist on October 1 (in Effingham), then leave for Houston on the 2nd through the 4th (Jenn will fly with me). There, I will get the usual PET scan and report from the dr. Pat will be gone on a hunting trip which I told him to go ahead and just go...no matter what the results, we will deal with it.

My mom said she did not like my last post very well and wondered if I was giving up. WHAT?  I am not giving up....but when your doctors tell you that you are terminal...you humanly think about things like I put in the last post and I think it is just normal. If God wasn't right beside me, I know I would not have lived through blood clots ALL OVER my body that put me in the hospital for over a week and a half. PLUS, I was told by the e-room in Olney and one guy who drove the ambulance (to Springfield) the night/day of my brain bleed/stroke that I really should have died. God spared me all of that as far as remembering much. I don't even remember the pain but my family says I was in alot of pain until the hospital had it under control. I had blood clots last November and was in Springfield for two days but my dr opted to hold off as far as doing surgery...and guess what....all clots are gone. I am on blood thinner shots 2 x a day to keep me from getting clots.

I pray to God every morning and every night thanking him for my life and being able to enjoy HIS creations on this earth each day. No....I haven't given up by any means. I have just put it ALL in God's hands and let him do what is the best plan for me. Yes, I ask for a miracle almost on a daily basis...but I also believe that not everyone gets their miracle to live on this earth, but they get eternal life. I have accepted this. I have faith God will always be there....always! God has gave me a slow growing cancer for a reason...to spend more time right here on earth with my family. AND the more time I am here on this earth....the more time for a cure or longer survival rate.

I thank everyone who even thinks of me or prays for me. I had a call from a lady in Texas (her husband and Pat had already hit it off in the waiting room and exchanged phone numbers)...as she was going into the radiation room at MD Anderson and I was coming out from already getting radiated. She made a comment about having liver cancer (her tumor is bigger than a football and wrapped around the vena cava) and I stopped dead in my tracks, pointed my finger at her and said Cholangiocarcinoma? And she said (in her Texas accent) "well yes honey, how did you know that?"  I told her I didn't know how I knew I just did. (I believe God was involved...yip...I am sure of it). We talked for a bit before she was pushed into the radiology room. That Danna & Travis have a schedule to keep and they are dang good at it!  Anyway...this lady told me that when I walked out of the radiation room, she felt I had total control of that whole room in a way she had never seen. That the room just lit up when I walked out of it...in a way she couldn't explain. She says God has plans for me...she just knows it. She says my positivity was uplifting (it is not always like that) She told me about a new machine MD Anderson is trying to get FDA approved for use on pancreatic and liver cancer. It is called a Kanzius machine. The machine has been used on animals up to 800 pounds. Would that be the most awesomest thing ever! Sign me up as a guinea pig right now. All you cholangiocarcinoma friends can Google it and find out more about it.

So...as I close, I want my family and friends to think about dying in a different way. Sometimes when a person gets close to dying, they are in severe pain, they are not living a good quality of life, they might be bedridden and need full 24 hour a day care. Maybe they are comatose. Do you want them to live because you need them there for your own selfish reasons? There is a better place. When my dad died, I did not weep(until later), I ask God to take him and let him be rid of all misery. Yes, it was hard but I knew my dad...the one that lived and breathed his grandkids, biscuits and gravy, hot chocolate pudding with marshmallows in it...he wasn't really there anymore. So I felt relief when God took him. I knew my dad was happy atlast when we buried him. I guess I am at peace that IF I don't beat this beast of a cancer, I will die knowing I am going to a better place. THAT is so calming to me. It is not the end.....it is happily ever after life on earth.

Please pray for building better blood test results to safer levels, this chemo being accepted into my body a little easier, and good results in Texas. Stability is my favorite word with my type of cancer. I love all you prayer warriors and thank God for all of you each night. God bless you all!!

HUGS & Prayers!

Wednesday, August 15, 2012

An interesting week last week.....

Last week was one of the weepiest weeks I have had since having the C word. I am on the fifth book in a series of 5 and it is nearing the end of the book with the mother dying of cancer. She is alot like me in the sense that she is not afraid of dying but WHO will be there for the first Christmas play for the grandchildren...the first day of drivers ed...all the firsts in the grandchildrens lives....and I have two daughters to get married off (one wedding in May and the other to hopefully happen SOON) and two who need to have a grandbaby for me. I just want to shake them and tell them to get on with it...I don't know how much time I have....don't they understand? I had a breakdown on the way to look at wedding dresses with Sam (for Leslie) Saturday morning as she could see I had red eyes and was not my usual self. I told her it wasn't fair that four girls under the age of thirty could not only lose their father in a one vehicle accident when they were in high school but now they would someday lose their mother to cancer. It takes 9 months to plan a wedding OR have a baby.I just want to fast forward their lives so I can see as much of it as possible.  Who will be there to enjoy morning coffee with my husband...or when a gun goes off...to go check to make sure he is ok.....who will he ever find to replace me that will watch the politics channel and even learn from him...although I usually call the winners in a presidential election. With all that said...the weekend came and went. Monday was chemo day and my platelets dropped from 118,000 to 75, 000. OUCH! So, I will get them tested in a week at RMH to make sure they do not get into the danger level and I could bleed to death. We were not able to up the level of chemo I received due to the low platelets. BUT, my white count was up and in normal range so that is good. I received the prettiest bouquet of flowers from my cousin and his wife (they are from New York) when I got home from chemo and that of course made me cry. They will be home in a few weeks for my nieces wedding so we will have somewhat of a family reunion. Then Tuesday comes and I get another arrangement from Linda Bookwalter...so I was doubly humbled.
Sunday, Jenn, (her dog Lainey), Samantha (Laddie, her and Chris's dog), and I went to Red Hill State Park to walk the loop. Then we met my mom and sister, Sarah for lunch at Red Hill. Afterwards, Sarah, Mom, and I went to Sumner for ice cream. My mom informed me I could not die before her. So, I bawled like a baby because she just isn't gripping it and letting God take charge of the situation. ONE DAY AT A TIME!!!  My mom is a picture of darn good health except for being a little chubby (sorry mom). I told her I'd put bets on me going first and she said it was NOT going to happen. Only God knows whats ahead.
Back to chemo day.....I just got the 60 % rate again and so far no side effects. Pat and I even walked when I got home from chemo...about 1 1/2 miles. It was day 3 when I got the "Boot, Scoot, N' Boogy" in the evening so lets hope for that again. One time and it was over with. WHEW!!

I sent my cancer story to MD Anderson and how I became a patient there. I had it proofed by my new friend Lucy who works there and they will send it on to be read and hopefully approved to be posted on the Cancerwise blog that MD Anderson puts out (with a picture of me). It will most likely be late September before it is published. I can then blog and as long as it is ok'd by the MDA staff...it could be an ongoing thing. I'll keep you posted.
I think I will go home now and walk...catch some fresh air and thank God I am still here to smell it and even though it mostly smells dry...we will get through this drought as we do all the other things life throws at us....with God by our side, anything is possible!!

Well...I am still finishing this blog and it is Wednesday...so far, so good. Pat and I walked again this am...only about 1 1/2 miles but I got up a little late this am. I had an old friend stop by to see me at work. Hadn't seen this friend for a long time but it was nice to catch up and almost forget about cancer for a bit.

I have read my Bible alot over the last few days and I just have to let lose of the control I think I have to have over my life COMPLETELY and let my faith take over 100%. I do not know how I would have made it this far without it. Only God knows when my journey will end in this world. He knows when my last day, my last hour, my last minute will be. I trust in Him completely. I BELIEVE!
God Bless you all

Monday, August 6, 2012

Calm & Quiet For A Change!

I haven't blogged in awhile due to not really having alot new to say but when I think back, there has been alot.
Of course, there was a great vacation on the Outer Banks, then the next day I received chemo. The new one with only a small side effect of profuse sweating....and the scoots for one evening (just one time). That was on Monday and then on Tuesday, I saw a pain specialist in Vincennes for a shoulder that has bothered me for about 3 months. I went back early Thursday and got a cortisone injection in the shoulder and he took me off the pain med I took at night for the shoulder pain to a 24 hour time release pain med (I wasn't real excited about the new pain pill since my pain is mostly at night when I lay on the shoulder). The shot wasn't the best feeling as he stuck the needle into the front of my shoulder and I had it in my pea sized brain, it would just go into the fatty part of my back.....but I lived and it has helped. He also gave me shoulder exercises to do (I saw a Dr. Chartier in Vincennes).
About two days after starting the new pain drug, I started getting a light rash.......so we couldn't decide if it was the chemo or the new pain drug. I  went off the pain drug completely. The rash is gone but I still break out in a sweat at the weirdest times. I go for chemo again a week from today (next Monday). So, I will get it every other Monday. I had the "scoots" one time and then took an anti diarrhea pill and that stopped everything dead in its tracks. This side effect could increase as they increase the drug. Whew! Yeah! Rah! Can't wait!
We saw Maura (Kelley) Voyles (Rod's daughter) as she is also getting chemo. She is older than I by a few years but I remember her and her husband worked for the state police with Pat in Effingham so he talked with her for awhile. Pat knew another family from southern Illinois or something that was also there. He was just a social butterfly (which is a little unusual for Pat).
We are crazy busy at work with several programs finishing/starting up so a day at work is crazy right now. I have a new full time worker (Sylvia Lancaster from our Lawrence County office....so she is mostly trained to how I like things done already) in the office but I have slacked off a day and a half each week to put me to part time but still enough hours to keep my insurance. They will be upping my chemo strength each time I go until it is as much as I can handle. So....as I get more of a dose, I will also have more symptoms. Could get interesting. You really want me to keep you posted???  ;-)

Everything is pretty calm right now and I am appreciative of this quiet time. My health is pretty sturdy right now. I am SO thankful God has given me calmness right now. I have been walking most mornings depending on when I wake up but I have been setting my phone alarm for 5:30 so I can have coffee from 5:30 to 6, then off to the pavement. IF I do not do it of a morning....it just doesn't get done! When I get home in the evening, it is all I can do to relax and watch the tv till 7:30 or 8 before going to bed.

I went to Evansville with my mom and sister Sarah and I got a larger pad of watercolor paper. I am sooo excited to start a picture! I also have a Christian book series I have been reading that I can hardly put down. There just isn't enough time in the evenings!!

Although my cards have tapered off to a mere drizzle nowadays (sniff sniff), I know you are thinking of me because my blog count "hits" keep raising all the time. So....I forgive you for slacking on the cards but thank you so very much for praying for me, thinking of me, and calling me. Prayer is free except for a bit of your time......and I always need prayer.

As I close today, I ask all of you to pray for the less fortunate. I ask you to pray for people in bad health (I find myself always praying for everyone else), then I say Amen and realize I forgot to ask God if he had any extra time, to remember me also.  I ask for more patience this week as I hear certain people whine over a back ache or hurt knee...(whatever) when I have so many more problems and see lots of sad looking people who are uncurable with cancer....it is hard for me to feel bad for them....I know I need to work on this...so I will try this week to be more understanding although I would trade spots any day with alot of them!
God Bless You all!!~